The last couple of weeks, I’ve been sharing stories about kids who have FASD and the various symptoms that come with this disorder. Because it’s cool to know we’re not alone. This week, I wanted to share some concrete strategies to help manage symptoms. FASD can’t be cured but we can set things up so that everyone experiences more success. Largely this involves losing the idea of discipline and helping our kids by managing expectations, the environment, and understanding what’s behind the symptoms that look like behaviors.
It’s hard to parent kids with FASD because it requires that we change everything we know and assume about parenting. Things like cause and effect, behavior modification, and natural and logical consequences just don’t apply.
The formula for increased success lies with us as parents in understanding how the brain works, changing our expectations, and modifying the environment. What really helps is seeing FASD as the brain damage it is. So when you’re looking at what’s happening with your child, you need to be thinking “can’t” not “won’t”. Once I got this, a million different conflicts and head banging situations (mostly mine) just fell away and the parenting wins started to happen. It’s not all rainbows and unicorns over here but it’s a heck of a lot better than it used to be.
All of the strategies below come from the understanding that our kids “can’t” do things and how to manage what they can do. Here’s what’s worked for us and some of the other families who’ve been kind enough to share their ideas.
CREATE AND FOLLOW A SCHEDULE
All kids need routine and structure. Apologies to the hippy/granola/free spirited parents out there but it’s true. It’s super true for kids who have FASD. A good working schedule prevents a lot of melt downs because the kids know what’s coming next. It’s a lot easier to remind a kid that “We only play with the tablet after dinner” then to try and fight over it all day long. Or that outdoor play happens before lunch or after snack.
I’m a spontaneous kind of gal so this one is hard for me. I like to decide on a moment’s notice that we’re going to go out for breakfast because….well…bacon right now. It never ends well. Or it’s fine but the boys are a hot mess for the rest of the weekend. I’ve also been known to take off on vacation for a month to Florida with a few days notice. Since I made an actual schedule and started following it, the number of meltdowns in a day decreased dramatically. I think this is why kids do so well at daycare centers. They have that sucker of a day planned down to the minute. Take a few minutes to decide what works for your family or how you want things to roll and actually make a schedule. Then follow it. (Note to self)
THINK LONG AND HARD ABOUT MAKING AN EXCEPTION
Once you have the house rules and schedule in place, think twice about making exceptions. Then think about it some more. Because kids with FASD obsess over any sort of exception, particularly if it’s a good one (to them), and will make you crazy for the next year asking for you to do it again. Over. And over. And over.
We have a rule that you only get your drink after you eat and there are no drinks between meals because Aiden would literally drink the day away and eat nothing. I am not exaggerating at all. Except that one summer day when it was hot out at the trailer and I gave out water mid-afternoon. Which is kind and noble and good parenting. It took until December for Aiden to stop asking for water during the day. All freakin’ day long. You know…just four damn months of him begging for water like a lost kid in the dessert. I know I was judged pretty harshly by my neighbors for not hydrating the kid but if they had to deal with leaky overnight diapers and soggy sheets every day, they’d get that he wasn’t dehydrated. Malnourished? Probably since he wasn’t ever hungry but definitely not dehydrated. Offering a drink of water in the middle of the day seems minor until you have a kid with FASD with a….well, a drinking problem.
ALLOW TIME FOR TRANSITIONS
Give kids a warning before one activity ends and give it in increments. We usually start with a five minute warning, then 2, then 1 and we’re off. Sometimes there are tantrums, mostly from the three year old, but it’s a whole lot easier than if I just plucked him from the playroom and tried to get started on lunch. If you’re child is super absorbed in an activity (tablets or TV is the big one for us), get in their face a bit so you know they’ve heard you. Like not in their face for real but make sure they’re looking at you and can repeat what you’ve said. They’re probably still gonna fuss but at least it’s out there.
MANAGE EXPOSURE TO OTHER PEOPLE AND NEW ENVIRONMENTS
My kids love visitors and new people. They also start falling apart quickly when there are too many of them. That whole over-stimulated thing. I know this sucks a bit but really try to minimize the parties and the entertaining. Either do it when they’re going to be sleeping or they’re away. Sadly, once my kids are in bed, I usually am too so that cuts down on the socializing thing quite nicely. #exhausted
The same applies to going out. Malls are a total no for our family and so is my favorite kids’ store. Liam, in particular, acts completely squirrely and the trip ends very badly. I think the last time I was at Once Upon a Child he wanted to find a new family and had to be dragged from under a rack of clothing while he kicked at me and tried to run away. This was the kid that was excited to go and buy winter boots. Also, Aiden, newly toilet trained, pooped in the toilet 4 times in 20 minutes. Just because he could.
During holidays, try to find a way to have a calm space in the midst of all the chaos. I used to take Aiden in to his bedroom when he was younger to rock him and minimize the noise since he’s very sound sensitive. My oldest daughter can recognize when the boys are starting to go a little nuts and will take them up to the playroom for some quiet play. She’s cool like that. Their birth mom? Not even a little bit. In fact, she’s the number one source of over-stimulation. Ugh. Legal rights to visitation and all that are so fun. If you’re at someone else’s home, talk to the host in advance about your child’s needs and where you could take him or her for some down time. Bring a quiet activity to do together for a few minutes to unwind like reading a short story.
If you need your little person to concentrate, take a look around the environment and remove any unnecessary distractions. In school, these guys probably need to sit at the front of the class and away from the window to limit what can catch their attention when they need to be concentrating. They may need earphones to block out external noises.
CONTROL EXPOSURE TO MEDIA
Because confabulation is such a big problem, limiting kids exposure to television and violent games can go a long way to making the stories less outrageous.
We have a wonderful respite home for the boys to go monthly so I can
socialize, attend fabulous parties, sleep in and eat chips for breakfast. The boys would come home telling these crazy stories of killing and smashing things. Oh. Transformers. We can’t watch that. We also don’t watch Sponge Bob, or much of anything that is in any way violent or adult like in humor even when the good guys win. Because of the sass talk that comes out of Liam’s mouth since he mimics every movie he’s ever seen.
Take the chronological age, divide in half, and that’s the age level for games and movies. Maybe even younger if your kids are really influenced by things they see. That means Paw Patrols and Bubble Guppies. I’m sure my friends with kids the same age think I’m a crazy helicopter parent but they just can’t handle anything more mature than the Octonauts genre.
PROVIDE CLOSE AND CONSTANT SUPERVISION
Kids with FASD get into a whole lot of trouble when not supervised so any fantasy you have about being a free range parent is over. You need to know where they are and what they’re doing all the time. Which is kind of sucky but true. That also means I have a lock on my bedroom door and on the basement door. We keep our medications locked up in my walk in closet (foster parenting requirement but it’s a good one. Except when you have a headache in the middle of the night.) and other dangerous things locked away. And we always will.
Even when the boys are in the playroom, they need supervision. I don’t need to be right in there 24-7 but I’m checking in all the time. Because the time I didn’t they ripped the curtains from the walls, dumped out all the clothes in their drawers, and used a toy hammer to bang up their television screen.
If your children are in school, you’re going to want to work with the school to ensure that the kids are closely supervised. Schools can be resistant to this because it takes resources that are already strained but it prevents a lot of problems for everyone. If they need to ride the school bus, pair them with a buddy and keep them at the front of the bus.
AVOID ASKING WHY
They don’t know why they did whatever but they’ll sure tell you a story about it that will only make you crazier. If you need to question things, use “how” or “what” questions instead. As in “How did this happen?” (I ask this a lot…about my whole life.) Or “What happened here?” And if you already know the answer, avoid asking them questions about how something happened. It just makes everyone frustrated. You’ll feel like they’re lying. They’re not. It’s a short term memory problem….that’s your “why” right there. This one might just be for me since I can’t seem to stop asking the why questions all the dang time. Like today when I asked why they would strip all the bedding off their beds. Who the hell knows. I decided it was laundry day and went from there.
PREVENT PERSEVERATION BY AVOIDING TRIGGERS
If you know what triggers your kid, avoid it all cost. For us it’s stickers and candy. If I buy stickers, I hide them until I’m ready to use them. We don’t use stickers as rewards in the traditional sense because the boys get fixated on having a sticker with no idea what they need to do to get one. Sometimes I hand them out if they’ve had a good day while telling them what made the day good. I accept that they’re going to stick them to their faces and we live like that until the tantrum at bedtime when they have to come off. And I make sure that they can’t see where I’ve hid them. That often means that I can’t find them again for awhile but that’s cool.
If we ever actually get to a restaurant, I try to have a word with the server before she takes our drink order. Because Aiden and his drinking problem and all. I have spent an entire 45 arguing with the kid about when he can have that drink that the lady so kindly brought him. Answer? After you eat your dinner. Reality? We’re never eating out again.
AVOID GENERALIZING THEIR STRENGTHS
Parents of kids with FASD cannot assume that if they’ve had a success they can repeat it from here on out. I couldn’t grasp this one at all with Liam. I kept assuming that because he can occasionally gets dressed he should be able to do it every morning. Nope. He can’t. The same applies for generalizing about places. Just because a child can do something at school doesn’t mean he can repeat the behavior at home. His brain doesn’t make that leap. I am so incredibly bad at remembering this. The learning problem is clearly mine.
Any parenting strategy that’s going to be successful for children with FASD really comes down to the simple formula of “Can’t,not won’t”, managing the environment, controlling your expectations, and understanding brain function. It all works together. Not perfectly, not all the time. But it makes it better and less crazy making.
You’re going to get a lot of crap from family members and outsiders who will tell you that you’re just making excuses for your kids and “how are they ever going to learn….” blah, blah, blah. I totally believed this until the FASD brain difference thing finally sunk in. Because I’m a parent who doesn’t want to raise kids that are jerks. But FASD is different. You’re not making excuses. You’re setting them and your entire family up for increased success. Screw what other people think. If they really give you grief, make sure they spend lots of quality time with the kids for entire weekends while you’re away. Preferably somewhere without a phone.